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thyroid misery

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  • Registered Users Posts: 2,131 ✭✭✭RentDayBlues


    I suffer from hypothyroidism and from time to time would have goitres on my thyroid but not large enough to warrant surgery

    Has the doctor explained what has caused the goitre? I'm assuming based on symptoms described its an underactive thyroid. If so, with ongoing medication you should feel better but it's a long road to get the right dose.

    I struggle hugely with weight and find some days I can barely get out of bed, but still try to exercise.

    Sadly the surgery may not be the answer to your problems but should be the first step, I suggest speaking to your doctor or consultant to get more information


  • Registered Users Posts: 14,036 ✭✭✭✭tk123


    I had half of mine removed 5.5 years ago! I had a large mass of thyroid tissue down into my chest that shut the rest of the thyroid down so the growth was overactive and the thyroid itself was under-active. Once it was removed it took about 2 weeks for the remaining half to 'wake up' and I haven't needed medication yet ;) I was really exhausted for a few weeks after the op and stayed in bed most of the time. My neck was very very stiff afterwards and it took a few weeks to free up again - it was almost like I wasn't able to support my head myself so I'd have to sit with pillows/cushions to take the weight of it. At first my head was kind of bent forward but as I healed I got more movement back. Swallowing was painful for the first while as well so I kept to soft foods and say lifting a shopping basket hurt for a couple of months too - like it was stretching the internal stitches. As the growth got bigger and bigger it was restricting my airway and painful to breath sitting straight up so I had very bad posture to accommodate it which took a while to correct.

    I started with one consultant who was old and a wait and see type of person, she retired and the new one had me in with the surgeon 2 weeks later and I had the surgery 2 weeks after that - only that I had holidays booked he wanted to do it the next week! Feel free to ask any questions!


  • Registered Users Posts: 2,462 ✭✭✭Orla K


    There's quite a long thread in long term illnesses forum about thyroid disease, lots of people have posted with lots of different experiences


  • Registered Users Posts: 471 ✭✭Aeternum


    hi OP, I had a tumour on my thyroid five years ago when I was fifteen and had a total thyroidectomy followed by radio iodine treatment. After the thyroid is removed you have to take eltroxin instead, which is a synthetic version of the thyroid hormones. After five years i still have issues balancing the correct dosage necessary - which means that I still suffer from extreme tiredness at times. Having your thyroid removed doesn't always fix the problem - because finding the correct dosage to reach correct hormone levels can be difficult.

    If you can find a good endocrinologist it will make things a lot easier. Best of luck and if you have any questions work away :)


  • Moderators, Recreation & Hobbies Moderators Posts: 21,163 Mod ✭✭✭✭Brian?


    Moved from Health and Fitness

    they/them/theirs


    And so on, and so on …. - Slavoj Žižek




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  • Registered Users Posts: 98 ✭✭mickysquint


    Guys thank you so much for the response's.

    Ok for starters the doctors have been fairly vague about anything other than that I need to have the growth removed now instead of leaving it until I'm older where I could develop breathing difficulties and secondly as far as I know the surgery will remove the growth and part of the gland, not all of it.
    The results of the fine needle biopsy should be back in the next few days so at least I can prepare myself for what ever comes next. I know it sounds stupid but I think I'm more scared of the thought that this is going to be a long term issue that's going to put the brakes on any plans I have to get back in shape.

    Guys thanks again for the replies, you've been a massive help.


  • Banned (with Prison Access) Posts: 621 ✭✭✭Under_Graduate


    I was browsing a few older threads on this and there was some information, but looking for something more updated.

    Generally, how long would it take to work, and what would the initial effects, and the long term effects (return to normalcy hopefully).

    I'm on it for almost two weeks now, and over the last few days, am noticing I seem to be sleeping more than I have in years, cause I've struggled with insomnia since these issues became prevalent about 8 years ago.

    So, sleeping more?
    The fatigue and lethargy is still present, but I mean, today I was able to sit down and study for a couple hours at a very relaxed pace, something which, again, I haven't been able to do in a long time.

    How long for the meds to take full effect?
    I hear some say 3 to 4 weeks.
    Other say months.
    I guess it depends on the individual, but at the very least I'm hoping to see gradual improvement.


  • Closed Accounts Posts: 631 ✭✭✭RoadhouseBlues


    I was browsing a few older threads on this and there was some information, but looking for something more updated.

    Generally, how long would it take to work, and what would the initial effects, and the long term effects (return to normalcy hopefully).

    I'm on it for almost two weeks now, and over the last few days, am noticing I seem to be sleeping more than I have in years, cause I've struggled with insomnia since these issues became prevalent about 8 years ago.

    So, sleeping more?
    The fatigue and lethargy is still present, but I mean, today I was able to sit down and study for a couple hours at a very relaxed pace, something which, again, I haven't been able to do in a long time.

    How long for the meds to take full effect?
    I hear some say 3 to 4 weeks.
    Other say months.
    I guess it depends on the individual, but at the very least I'm hoping to see gradual improvement.

    As far as I know it takes about six weeks for the dosage to kick in, but it can take a long time to get the dosage right. There are lots of people on this thread who are great and will prob be able to help you better than me. Hope it all works out for you.


  • Registered Users Posts: 1,162 ✭✭✭Wyldwood


    Under_Graduate, as RoadhouseBlues said it takes a minimum of 6 weeks for the thyroid meds to stabilise hormones in the blood (also 6 weeks to leave the system if you stop taking meds for any reason). However, while a lot of people feel an initial improvement, you may find that you need to increase the dose after 6-8 weeks and some tweeking will probably be required for a while until you find your sweet spot.

    It's very important to have blood tests done 6-8 weeks after beginning meds or any increase/decrease in meds. Always get hard copies of your blood results from your GP in order to track your reaction to the various levels of medication. Make a note on the of what dose you were on when tests taken.

    Be patient and don't expect to feel better straight away but hopefully, you will improve as dosage is adjusted and you'll feel more like your old self again.


  • Registered Users Posts: 332 ✭✭Simon_K


    Hello everyone,

    Can you recommend a good place to get a thyroid function test done? I've searched in google but the only definite result was some self-test for 80 euros...


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  • Registered Users Posts: 3,161 ✭✭✭Amazingfun


    Simon_K wrote: »
    Hello everyone,

    Can you recommend a good place to get a thyroid function test done? I've searched in google but the only definite result was some self-test for 80 euros...
    The Mater Private will run a good panel including Free T3 and Free T4 . It's 110 I think? You need a referral from your GP though.


  • Registered Users Posts: 735 ✭✭✭cltt97


    TFT is typically FT4 and TSH and you can get done via any GP. If you want to have FT3 done you have to go privately and pay for it, it's not really available publicly. I go to James Private Hospital. Can't quite remember how much I pay there but I think it's not as much as 110...
    If you just want to check if there is anything wrong with your thyroid, FT4 and TSH are a good start. If you have reason to believe you might have auto-immune ask for anti-TPO also.


  • Closed Accounts Posts: 592 ✭✭✭hotwhiskey


    Hello.

    I was diagnosed with Graves disease last June. I was put on steroids, 600mg Propyithiouracil also 160mg inderal a day. At Christmas my medication was greatly reduced as my thyroid is under control. Since Christmas I was getting bad pains in my neck and I was sent for ultrasound in February which the thyroid had come diffusely enlarged and a nodule 3.7mm was dedicated . Anyway these results were sent a Consultant Surgeon's Clinic at the Mater by my own GP. I got a appointment to see the surgeon on 22 May. My neck as really swelled out over the last three weeks since the ultrasound really noticeable on my right side. My main problem is neck pain, headaches, head movement and choking in my sleep

    I was just wondering is this waiting time normal under medical card to analyses the swelling. I was not to worried before but now I'm really concerned.

    Any help or views is greatly appreciated.


  • Registered Users Posts: 2 Bones86


    Hi All,

    First post on Boards fulls stop but I've been reading through this thread over the last few days.

    Back in April last year I began feeling uncomfortable pains in my neck, after a week of them not subsiding I though something was up. I was away with work at the time so had to wait a couple of weeks before I got to my GP (wanted to see my own GP). She suspected the pain was due to my thyroid and did blood tests. The tests came back with TSH 4.2 and T4 13.1 which she was in the normal range. As my neck was still quite painful she referred me for an ultrasound which displayed an enlarged thyroid (on the right side) with no nodules and not indicating Hashi's.

    With that I was referred to an Endo by the name of Dr. McKenna in St. Michaels in Dun Laoghaire. It turns out he treated my aunty and grandmother for Hypo over many years which I became aware of myself when asking about family members. He repeated the blood tests and included an antibody test which came back elevated (don't have the actual leveld to hand).

    I am 28 years old (male), am quite fit and active. The endo proposed that due to my family history I was at risk of going Hypo and he would like to keep an eye on things over the coming years with blood tests every 6 months. As for the neck pain, I was basically told to live with it. In fact, the pain subsided over the summer during which time I controlled my diet as best as I could with regards to reducing any treats etc. In October of last year the neck pain returned but intermittently. Since then it often bothers me. I returned for blood tests in November which were all in acceptable levels (including antibody) so I was told all was fine (by my GP). The neck pain however, did not go away.

    I rang my GP last week to speak to her about the continuous pain and I'm to get another Ultrasound soon to see if the thyroid has changed in size. I'm also to get new blood tests done. She also discussed sending me to a new endo who has seen this kind of beginnings to Hypo before (I'm yet to find out who this endo is as of yet).

    I thought it would be good to share as my GP following a call to my existing endo thinks I may be a little bit more down the road to becoming hypo although we'll wait to see how the bloods come back? From all the reading here, not many have ever complained of bad neck pain from their thyroid. Anyways for anyone interested I'll post on how I get on over the next while as it could be the beginning of something that has effected a number of family members.


  • Registered Users Posts: 1,162 ✭✭✭Wyldwood


    Bones86, welcome to the thread.

    I am a lot more hypo than you and suffer occasional sharp pains in my thyroid area that the endo couldn't explain. I just ignore them now.
    Looking at your blood results and without the ranges I would think you are headed for hypoland, your T4 is quite low, assuming it's Free T4. I would ask for a Free T3 test also next time you have a panel done.
    You should ask your GP and endo for copies of all test results as you get them so you can monitor your progress, these will have the ranges printed on them so you can see if your top or bottom of range.

    Hope you feel better soon

    Hotwhiskey, I'm afraid I can't help with the question re waiting time but i think you should head back to GP if you're in that much discomfort. I've had Graves and know what a very distressing condition it is.


  • Registered Users Posts: 2 Bones86


    Wyldwood, thanks for the info.

    I am due to see my GP tomorrow so I will ask about the free T3 done as well, if that's possible as I see it's not commonly done. Also getting an ultrasound in the next couple of weeks so I should know how things are soon enough. I'll post on how I get on, given the pain over the last week (quite severe - can barely turn my neck) I'm not expecting good news anyways.


  • Banned (with Prison Access) Posts: 1,311 ✭✭✭Chemical Byrne


    Hi all. My new girlfriend of 2 months told me casually in passing on our second date that she had an underactive thyroid and had to get monthly blood tests etc. She often mentions being a "cold creature" at times too in a causal remarky type of way. I haven't brought up HT with her in conversation since as I don't want to be upsetting or bothering her on the ins and outs of her health in these early stages of our relationship. She is a really great girl, smart, outgoing, funny, mature & responsible, good looking and well able to mind herself, she's 30, I'm 28. I care for her a great deal and relish spending time with her but lately this HT issue and what it might mean down the road has been weighing on my mind a bit.

    Things are going well for us but I have been doing some reading up on the net about the various forms of the condition, symptoms, different treatments, side effects etc etc (inluding having a good trawl through this thread and some other forums) and to be brutally honest about it, I'm getting quite worried about the whole thing and fearful for the relationship's future. No offence intended but 90% of stories I've read (here & elsewhere) seem fraught with debilitating symptoms, side effects of treatment, dramatic weight gain, accelerated ageing, sexual and fertility problems, extreme fatigue, mood swings, depression, constant balancing acts with expensive meds and tests etc etc. I like this girl a lot, maybe even starting to love her, and from what I see at least she seems pretty healthy and active at the moment (aside from some coldness & v. trivial fingernail complaints) but I just can't help thinking that I don't think I could be truly happy with someone who might have a very high chance of becoming unlucky and later get very unwell with above symptoms and maybe unable to recover successfully to an "as normal" degree. I feel like an asshole for even thinking this way but I don't know if I can or should continue with her.

    Now I do know that, (as with any issue be it health, car problems, houses etc), forums may not provide a representative example of outcomes as it's often only the horror stories where things go wrong make it on line while the successful cases carry merrily on with life. Sorry I ramble!


    I suppose one thing in my mind is fertility and pregnancy problems down the road - I know it's possible but I hear of lots off negativity like miscarriages, stillbirths and unhealthy babies.

    I honestly don't know if I could commit myself to a relationship where there is a fairly high prospect of a sudden and possibly irrecoverable deterioration in her condition. Today I've been toying with the thought that perhaps, heart breaking as it may be, I should end things with her, for both our sakes, before things become too serious and so I'm not leading her on and wasting both of our time and causing greater hurt in the long run. At the minute I'm bordering on tearfulness as I type because the idea that I should just finish with her is lurking in the back of my mind with the last day or two.

    Basically I'm wondering what are her chances of having a normal, healthy life like any other girl with the treatment available today? Reading here, i get the impression that treatment is a somewhat hit and miss for lots of people.

    Do the majority have successful treatment and live life "as normal" and only a minority have ongoing troublesome treatment/issues?

    In general, is this a condition that is successfully treated for most or is it a significant and ongoing condition for most?

    Are the majority of incidences of the condition chronic and lifelong or can it get better over time (wishful thinking on my part perhaps)? From what she little said of it I somehow took up the, possibly erroneous, jist that it was more of an intermittent problem with her. I may be wrong though, I knew nothing of the condition at that time.

    On one level I feel I want to tell her these thoughts but on the other hand it might understandably seem upsetting and unpleasant for her.

    Essentially, I'm lost in all this and don't know what to do. I would greatly appreciate the opinions and insights of your good, knowledgeable selves. I'm sorry for any negativity or offence, not my intention.


  • Registered Users Posts: 4,055 ✭✭✭Emme


    Essentially, I'm lost in all this and don't know what to do. I would greatly appreciate the opinions and insights of your good, knowledgeable selves. I'm sorry for any negativity or offence, not my intention.

    Do the girl a favour and break up with her. Hopefully she will find someone who really cares for her and doesn't see her underactive thyroid as an inconvenience. It's a good thing you weren't married to her before she was diagnosed.

    People get diagnosed with different illnesses all the time. Many women with underactive thyroid have families - they need monitoring but most women do to a certain extent.

    Put it this way - if you were married and got diagnosed with diabetes or some other illness how would you feel if your wife divorced you for not remaining in perfect health? Men can develop thyroid problems too.

    I wish you well in your search for a partner with perfect health and I hope any children you have will also be perfectly healthy.


  • Banned (with Prison Access) Posts: 1,311 ✭✭✭Chemical Byrne


    To clarify, I would not have any qualms about helping her research treatments and tests and help and encourage her with any lifestyle modifications required. Even the financial cost does not bother me. Can a normal lifestyle be had generally speaking.

    I don't know, perhaps you may be right.

    I will need to think about things.


  • Registered Users Posts: 1,162 ✭✭✭Wyldwood


    Chemical Byrne,

    I have to echo what Emme says, life is very unpredictable and you have no guarantees that anybody you decide to marry will have perfect health through life (nor even your own health for that matter).

    I have been hypo for nearly 40 years and had 4 children during this time, all of whom are healthy. My hypothyroidism never caused me any problems until 4 years ago and I have led a perfectly normal life, I've worked full time, raised my 4 healthy children, travelled far and wide and am now a very happy granny in spite of having some thyroid problems.

    If you really care for this girl her hypothyroidism shouldn't come into the equation, however, if you're not prepared to support her then let her go to find somebody else.


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  • Banned (with Prison Access) Posts: 1,311 ✭✭✭Chemical Byrne


    I don't feel it's a question of me being unwilling to help or support her, she is a great person and if we were in a committed LTR I would undoubtedly do everything I could to help her lead a normal, healthy life. She seems perfectly healthy and happy at present, full of life and very active with different sports and stuff.

    It's more of a thing of me ending up unhappy in the relationship.
    I accept it's a selfish thing of me but, having foolishly spent over 7 years miserable in a toxic, manipulating relationship, I feel I would be unfair to myself to knowingly enter into an LTR with someone who [probably has a higher than average risk of being potentially seriously and chronically unwell in the future and me, at that prospective point, staying on out of moral obligation to do so.

    I will be meeting her on the weekend for a function, can't really tell her at this though. I will think hard about this between now and then. She is very dear to me in many ways. Having said that, where there are any doubts in the early stages of a relationship it's probably best to end it. Don't know if I should explain the reasons or would that only cause further hurt? She's going to be hurt either way I suppose as she recently is dropping hints about going away for a weekend soon.


  • Registered Users Posts: 4,055 ✭✭✭Emme


    I don't feel it's a question of me being unwilling to help or support her, she is a great person and if we were in a committed LTR I would undoubtedly do everything I could to help her lead a normal, healthy life. She seems perfectly healthy and happy at present, full of life and very active with different sports and stuff.

    It's more of a thing of me ending up unhappy in the relationship.

    I accept it's a selfish thing of me but, having foolishly spent over 7 years miserable in a toxic, manipulating relationship, I feel I would be unfair to myself to knowingly enter into an LTR with someone who [probably has a higher than average risk of being potentially seriously and chronically unwell in the future and me, at that prospective point, staying on out of moral obligation to do so.

    Who was the toxic manipulating one in your last relationship?

    Your girlfriend has a condition which is very treatable. Many women with underactive thyroids have long happy relationships with children.

    You sound selfish. If you cannot accept your girlfriend's minor health issues then let her go as soon as possible. Preferably this weekend and never mind the function. Don't tell her the deal breaker for you was her underactive thyroid because that will destroy her confidence. Tell her you haven't got over your last toxic selfish relationship and that you are thinking of going for psychotherapy. It might not do you any harm to do this in reality.


  • Banned (with Prison Access) Posts: 1,311 ✭✭✭Chemical Byrne


    FYI, she was.

    I am aware that it is treatable but any personal experience stories I've read about has been predominantly negative ones.

    I sense you are adopting a somewhat hostile posture towards me Emme but, regardless, I can appreciate your point of view and in fairness, you're probably right in the content of what you say. I'm increasingly thinking I should to let this girl go.


  • Registered Users Posts: 4,055 ✭✭✭Emme


    FYI, she was.

    I am aware that it is treatable but any personal experience stories I've read about has been predominantly negative ones.

    But regardless Emme, I can appreciate your point of view. I'm increasingly thinking I should to let this girl go.


    Let this girl go and consider counselling for yourself as you don't seem to be over your last relationship. You need to be in a better place psychologically to deal with the realities of a relationship.

    Not all illness are necessarily physical.


  • Banned (with Prison Access) Posts: 1,311 ✭✭✭Chemical Byrne


    Perhaps you're right. Maybe I jumped into this relationship too quickly.


  • Closed Accounts Posts: 364 ✭✭lovelystuff


    I had to jump in here Chemical Byrne. I have hypothyroidism, and it is something that flares occasionally. For your understanding, a flare in my case means extreme tiredness and yes some weight gain and dry skin. As with any condition, it is a very small part of who i am as a person. I have a degree, masters and a PhD. I have great friends and a brilliant fiance who luckily is understanding about my illness. In reality the only impact it has on him is that when I'm having a bad day or week I am very tired and need to take it easier. It does not ruin his day or week. The fertility issue may come up for us in a few years we will deal with it as a team. I find your posts a bit upsetting if I'm honest as if I thought for one minute my fiance thought of me the way you think of this girl I'd feel even worse about living with this illness. It's not my fault i have it, and it also does not define me as a person.


  • Moderators, Society & Culture Moderators Posts: 32,285 Mod ✭✭✭✭The_Conductor


    FYI, she was.

    I am aware that it is treatable but any personal experience stories I've read about has been predominantly negative ones.

    Chemical Byrne- if you go on the internet and read up on even the most innocuous of conditions- you will find thousands of nightmare stories. Its the nature of the internet- you are deluged with appalling stories- or miracle stories- you don't hear what happens to the average person walking down the street.
    I sense you are adopting a somewhat hostile posture towards me Emme but, regardless, I can appreciate your point of view and in fairness, you're probably right in the content of what you say. I'm increasingly thinking I should to let this girl go.

    Hostility and incredulity are two different things- I was experiencing increased incredulity as I read your posts here.

    Hypothyroidism is incredibly common- and to be perfectly honest, while I wouldn't wish any illness on anyone- if this is the extent of the illness your girlfriend has- she is a lucky person. I have hypothyroidism too- controllable with an interesting dose of eltroxin. It doesn't bother me. I take my eltroxin amongst the tablets I take every morning- which number 18 in total. I'm far more concerned about my warfarin, which I also take- than I am the eltroxin.

    I get my bloods done regularly- sometimes as frequently as weekly- sometimes I get a longer interlude between my visits. I get these done as an outpatient in Blanch. I get up 15 minutes earlier to make the visits- and I'm back home in time for work and to leave our children to school.

    To be brutally honest with you- if you are considering breaking up with the poor girl over hypothyroidism- just do it. Don't string her along. It sounds incredibly petty- and almost as though you are looking for a reason to break up with her. On the scale of things- its a minor ailment- and a mere annoyance for most people.

    If you are so incredibly concerned about her underactive thyroid- just give the girl a break and leave her alone. Aside from the fact that it sounds like you're making a mountain out of a molehill- the way you have discussed hypothroidism and the poor girl here- are borderline callous.

    Life isn't perfect. Things will go wrong for people- all people- sooner or later. If hypothyroidism is the extent of all that ails the girl- she is a lucky girl. She would be far luckier if she ended up with someone who viewed it in a reasonable and logical manner.


  • Registered Users Posts: 29 Lumps Bumps n Blues


    Hi folks,

    I'm looking for a sounding board, and I hope this thread might help - I do apologise, this will be a long post.

    Bit of a background - I was diagnosed with hypothyroidism (and all that it entails) in my late teens, and I've been on various dosages of Eltroxin on and off since then. Nearly twenty years later, i.e. five years ago, I was diagnosed with a multi-nodular goitre, I got ultrasounds a few times since then and I was told that the many nodules I had were of various kinds (hot, cold, cysts, calcified, vascularised and not, with both even and uneven margins, merged into each other, etc, you name it. I was also told I have a smallish median cyst). The FNA was done on 4 or 5 samples as I was told I had too many nodules to test them all. They couldn't confirm or exclude cancer, but I was told they did find some atypical cells. They wanted me to get surgery right away just to get it out of the way, they made it sound like routine and no big deal at all (they even mentioned to me to convince me that they operated on a teenager who wanted to be a model and who thought her slight goitre might be unsightly and compromise her career!), but I had big concerns about my parathyroid glands (they couldn't confirm whether they'd be able to save them), and the potential damage to the laryngeal and facial nerves, let alone the long-term hormone imbalance after surgery, the depression, etc, and the length of time it'd take me to recover.

    Then some very serious family problems intervened, so I put things on the long finger. Earlier this week, at the insistence of my GP, I went to see a consultant (a very very experienced endocrinologist and surgeon) who also said I should definitely get it done almost right away as nodules in hypothyroid patients can get a bit 'naughty' (sic) but that they'll only know for sure once they have the pathology results from the surgery.

    My doubts, however, remain the same. I also feel I'm crazy in thinking I'm more afraid of the potential side effects of the surgery than I am of a cancer, as in I'm not scared by thyroid cancer at all, I feel like I'm staring at a train coming towards me and I don't care. Which, rationally, I know to be insane, but this doesn't change my feelings.

    What I'd like to know is:

    1. Are there any more tests/scans that I can get done to confirm whether or not I have thyroid cancer? At the moment, FT3 and FT4 are ok, but I have high TSH, the thyroglobulin is about 4 times the high range, and the TPO is nearly 10 times the high range.

    2. What percentage of multi-nodular goitres are actually cancerous?

    3. What is the outcome for untreated, non-cancerous multi-nodular goitre?

    4. What's the outcome for untreated thyroid cancer, regarding speed of its spreading, life expectancy, pain, etc?

    5. Is there any other treatment to be considered aside from surgery?

    6. Has anyone here/anyone you know decided not to go for surgery and why, and were they happy with their choice?

    I suppose I'm trying to gather as much information as I can from both sides to help me decide what to do.

    Thanks for reading and for any feedback.


  • Registered Users Posts: 1,162 ✭✭✭Wyldwood


    I can't help you with the cancer question I'm afraid, other than to say thyroid cancer is one of the more easily treated cancers. I can tell you about goitre surgery but my experience is nearly 40 years ago and was a far more serious operation than it is nowadays where it is virtually keyhole surgery.

    I was 19 when I underwent surgery and had 90% of my thyroid removed. I have a 7" scar across my neck whilst now the incision is only a couple of inches. I lost my voice for a few weeks and could only croak, my friends thought this was a relief! I can remember being very careful lifting my head because of the scar but otherwise had no real problems. I had to take it easy for a few weeks but that was fine as I wasn't feeling very energetic.

    To me being rid of the thyroid, which caused me to go hyperthyroid, was a huge relief. I was in college at the time and was back at lectures 3 weeks later and at the college Science Ball just over a month later.

    I would think that if your surgeons feel that the thyroid needs to go you shouldn't postpone it any longer. Nobody likes surgery but better than the uncertainty you are now living with. Once you have recovered from surgery you will be on a highish dose of levo and once that's stabilised hopefully you will have no further problems.

    Best of luck with the op.


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  • Banned (with Prison Access) Posts: 1,311 ✭✭✭Chemical Byrne


    Hello again,

    My gf was over at the weekend and I brought up the subject of her condition as I have decided that I want to help her through it. We talked through what it means for her. It's Hashimoto disease, the autoimmune form of hypothyroidism. She is taking hormone replacement tablets daily to treat it. Now as I said before, she is fine really and is very active and out and about like anyone. She says she doesn't think about it much and she is normally herself with just some minor inconveniences and the occasional day where she feeling sluggish and feels the cold more.

    She said the endocrinologist she saw a few years ago told her to get a food allergy test to gluten done as even a slight gluten sensitivity, while not in itself sufficient to cause noticeable digestive problems, may trigger or aggravate the autoimmune response of Hashimoto's resulting in inflammation and scarring. She never got the test done.
    Apparently on further reading the gluten protein molecule is similar in structure to some protein molecules in the thyroid's cells so when the immune system erroneously attacks the gluten which it senses as a pathogen it erroneously also identifies the similar proteins of the thyroid's cells as gluten and foreign and attacks those tissues accordingly.

    I was thinking of encouraging her to either rule in or rule out the gluten sensitivity by going for the test and if it looks positive, actively helping her to create a GF diet that she would be happy with and see how or if it will help her. At the moment I'm thinking I could buy gluten free foods to use to make GF meals for her when she's over which is usually 2 or maybe 3 times a week.

    The thing is though, she's didn't seem to give a whole lot of thought to what the endocrinologist said about it and seems to be fixating on hormone replacement tablets to treat the symptoms of her damaged thyroid rather than modifying her diet and lifestyle to help give her glad a chance at some sort of partial recovery from the damage, or at least slow down and minimise further damage. Of course it is no silver bullet for the disease but I feel it is worth trying at least as it might offer some ability to slow or stop its progression. Likewise, an over reliance on synthetic hormones might be suboptimal too. I am more than willing to assist in putting together a GF but no less palatable diet for her, even if that means me getting and preparing stuff for her.

    I think I'm worried she could accelerate the damage and eventually the hashimoto's would completely destroy her gland if she doesn't follow a diet for the condition. From what I've read at least, treating the condition solely by using hormone replacement to effectively circumvent the gland's function is a bit of a hit or miss exercise at best, potentially with a lot of side effects.

    Another thing is she also uses hormonal contraceptives. Now from what I've read the hormone in most contraceptives has a high affinity for T hormones, binding to them readily and reducing their bioavailability for use in tissues thus exacerbating the symptoms of hypothyroidism. That she feels the need to use birth control is sort of beyond me to a degree as, although we often sleep together, we don't have sex :confused:

    I fully realise that all of the above is her decision at the end of the day and I certainly don't want to be seen as pestering or making a nuisance of myself so I'm careful to approach it in a tactful and sensitive manner that seen as positive rather than annoying.


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